The National Down Syndrome Policy Group (NDSPGO) and over 61 organisations representing the interests of disabled people across the UK have written an open letter raising concerns about the potential impact of legalising assisted dying.
It calls on MPs to take a more cautious, inclusive, and comprehensive examination of the Terminally Ill Adults (End of Life) Bill to ensure it does not inadvertently harm the most vulnerable in society, as already evidenced in other countries.
The open letter warns that assisted dying laws could place individuals with Down syndrome and learning disabilities at heightened risk of coercion or pressure as they may struggle to fully understand and consent to end-of-life decisions, with and without appropriate adjustments being made.
The group adds that there is already historical evidence of inequalities in healthcare. For example, during the Covid-19 pandemic in 2020, the National Medical Director had to remind NHS staff that: “The terms ‘learning disability’ and ‘Down’s syndrome’ should never be a reason for issuing a DNACPR [Do Not Attempt Cardiopulmonary Resuscitation] order or be used to describe the underlying, or only, cause of death … Learning disabilities are not fatal conditions.”
Despite this directive, an analysis published by King’s College London in 2021 revealed ongoing failures, with significant instances of poor practice surrounding DNACPR orders for individuals with learning disabilities.
The open letter also refers to the rushed consultation process, which does not adhere to the recommended 12-16 week public consultation period, limiting comprehensive input and risking oversight of diverse societal values.
There was also insufficient time for thorough analysis by healthcare professionals and inadequate engagement with affected and marginalised groups directly at risk from this legislation.
In addition, by failing to provide easy-to-read materials and other necessary adaptations in accordance with government process, it also excluded individuals with learning disabilities from participating equitably in the consultation on legislation that impacts them.
Rachael Ross MBE, Founding Officer, NDSPG, said: “Everyone deserves access to compassionate end-of-life care, and the assurance of a dignified death must be available to all. However, the proposed Assisted Dying Bill fails to uphold this ideal.
“We must carefully consider the evidence and heed the warnings from all other countries that have implemented similar legislation. These experiences demonstrate in every case that no set of safeguards can prevent the scope of such laws from expanding, nor can they guarantee the safety of people with learning disabilities and the most vulnerable in society during their most fragile moments.
“Our government bears a fundamental duty to safeguard protected minorities and those at risk in our society. If there is even a hint of uncertainty regarding the potential ramifications of this legislation on their well-being, it cannot proceed. The objectives of one group, no matter how well-meaning, must never take precedence over the safety, dignity, and protection of our most vulnerable individuals.”
